Taking Charge of my Health

Last week, I went to the rheumatologist to have my check up and lab work. My lab results won’t be in for a couple of weeks. He did the typical tests including checking my vitamin D level I always call about my test results. Why? I don’t want something to be found on my labs six months later that needed addressing. I know sometimes it annoys the nurse, but it’s my body and my health. It’s my way of being active in my own healthcare. Doctors  make mistakes just like patients make mistakes so I don’t want to fall through the cracks. Ultimately I’m the one that pays the consequences if something is missed. Usually two weeks is enough time to receive my results.

Do you call your doctor for test result? Should doctors call a patient even if the results are negative? It’s your turn.

A Productive Doctors Visit

I went to the rheumatologist last week and the doctor listened to my concerns. I refused to have one of the interns to examine me. Last time I went she was really rough with me. There was no way I was going through that again. Its very hard when a doctor does not respect your limit. This last visit was very good visit. The doctor was able to sit down and speak to me so I was able to voice my concerns. When you have a doctor that listens to your concerns it helps the patient a lot. We have to drive over 2 hours just to get to his office. I’ve tried the local doctors, but they just don’t know how to treat the lupus. So the drive is worth it for me to get quality care from a doctor

The Good One's Always Leave

I am so glad the weekend is hear and I’m done with doctors appt. Its such a long drive to the rhemotologist, but I always pay for the darn appt. I feel sore today. All I want to do is lay day, but that’s not an option. Lupus really does suck a rotten egg, excuse the statement, but that’s really how I feel. Now, I’m stuck wondering what my blood work will come back and next week I have to go to my primary doctor. I hate going to the doctor, but thankful that I can go to the doctor. I’m now left in limbo to find a new neurologist because he’s no longer there. Just when I find a decent specialist they are gone. He was good by me. A good listener and a good reactor. If I had a complaint he reacted not ignoring me. I am thankful for having a great doctor while it lasted. I just hope I can find another good one

Part One of Doctors Appointment

Yesterday, I went to rheumatologist. Well after after a long ride we ended up getting lost some how because we ran into construction and they decided to change the name of a street in the mean time. Its been 6 months since I’ve seen him so a lot of things looked different. We ended up taking a tour of the bad end of town. That was not fun at all. Eventually we did find our way to the doctor. After taking an unwanted tour of things. When we got there I was wore out just the stress in its self. Well I was not so blessed to have a student that did not know what the word “OUCH” means. She decided I needed a work up for some darn reason and she needs a lesson in what pain is. I can’t believe this. Her demeanor was I’m going to do this exam to prove I can do it. Then after she pooked a proded at me. The doctor comes in and does his exam on top of it. Needless to say I feel I’ve been ran over by the train station once again. Its absolutely crazy and I never got some of my concerns addressed because I no longer had my notebook in my hands. Well in the end I got a little bit of a pay back she had to help me put my sweaty socks back on because I could not even put my own darn shoes after the exam. Its not much of a compensation, but at least I can remember the expression after a horrible exam. What I learned is I need to be more forceful when I hurt leave me the hell alone…  Well that’s part one and part two will come soon.

Lupus Foundation Research and My Experience with Vitamin D

The Lupus of Foundation is doing a some studies that were interesting to read.

Recently, I was at a health food store and the woman told me there were benefits for lupus patients from Omega 3 fish oils. I thought that she was just trying to sell me a another unproven treatment for lupus. So I look at the studies they are doing on lupus and one of them is the effects of omega 3 fish oils. The study states they are giving people low dose supplements of omega-3 oils. They are looking to see if the oils protect against stroke, heart disease and hardening of the arteries.  They are researching to see how the omega 3 fatty acids affect white blood cells on the immune system. You can read more about this research study here. I am going to check with my rhemotologist about taking this supplement.

Having a vitamin D deficiency is something I’ve touched on in the past. A vitamin D deficiency can cause a whole host of problems.  I’ve had a stroke which the neurologist linked to the Lupus. A year and a half I found out I had a critical Vitamin D deficiency. I can’t go outside for to long or it sends me into a flare.  It was proven in the research study that people with lupus. I have to take supplements of vitamin D and calcium.  You can get vitamin D from food and from the sun. Soy, milk and cereal just to name a few. The many things that a vitamin D deficiency can cause are unreal. I have to go back to my rhemotologist this week and they are suppose to check my D levels. I hope they are okay. Last couple times I’ve ended up on mega doses of vitamin D. I hope this doesn’t happen again, but if it does I’ll deal with it. Just another pill. The lupus foundation of America has done another research study on Vitamin D

Rant About Darn Pharmacy and Doctor's Hours

Well I’m on another rant today. I get up feel half way good then boom afternoon comes and I totally feel really yucky. It don’t help that I ran out of one of my medications because I thought it had a refill because the bottle had a refill and then the insurance company made the pharmacy call my rheumatologist. When n they are only around one time a week it makes it difficult to get medications refilled. SO my advice to you all just cause you got one refill don’t always mean you really want it cause the pharmacies/insurance companies can’t count. Its frustrating because I feel like I’m starting from scratch with my medication for nerve damage. It’s the one medication that keeps me from going out of my mind with the pain. Yes, I’m ranting, but if I don’t It wouldn’t be my page.

Rheumatologist Appointment

Yesterday, I went to my 4 month check to the rheumatologist. It’s always a long ride there and back. We left in the morning and didn’t get home until 5 pm. It made for a really long day. I’ve had this upper respiratory stuff and he had to give me an antibiotic. He checked me for pneumonia and it came back clear. That was a major relief. I still have other tests out, but this is a major relief.

I have to go a rheumatologist so far away because I’ve dealt with a lot of my symptoms are in my head. Many doctors don’t want to diagnosis you with lupus. I totally understand that, but refusing to treat symptoms is unrealistic. I suffered in pain with little relief for 4 years because of ignoring my symptoms. I can say I’m thankful for the doctors I have today. All of them listen to me and react when they need to. I feel more like a patient, then a number in their checkbook.

Good doctors and nurses are hard to find. If you have good doctors hang on to them because they are hard to find.